4.30.2012

Iz is just finishing up her OWL (Our Whole Lives) sex ed class at our Unitarian church. She's been going for three hours every Sunday evening for several months. They've covered a wide range of topics, from dating to gender identity to STDs to reproduction to sexual identity (including a PFLAG presentation), and plenty of frank, frank talk.

I very much wish I'd had access to this kind of clear, non-judgmental information sharing when I was thirteen, and then spent time in an open and accepting Q&A arena. Wasn't going to happen in a Catholic RE class in 1983, no sir. But how many of us could have benefited from last week's exercise & discussion, I wonder? From the charming Derby, our UUFRC Director of Religious Education:

Tonight was all about sexually transmitted infections (STIs). We
started with a condom obstacle course, which is designed to counter
myths about condom use. The teens try condoms on their hands and see
what they can feel through the condom (e.g., a feather) to counter the
"I can't feel anything" myth. They stretch and measure (and in some
cases, blow up like balloons) condoms to counter the "I'm too big"
myth. Using wooden penis models, they practice putting on a condom
correctly and see how quickly they can do so to counter the "it's too
complicated" and "it will take too long" myths. This is widely regarded
as the most popular activity of the entire OWL class.

We followed the obstacle course with an activity that
demonstrated
transmission of STIs by exchanging M&Ms with various partners
(different colors representing different STIs or no consequence). Next
was a summary of several STIs (symptoms, permanent harm caused, cure,
vaccine, transmission, and prevalence in the U.S. population). We
followed that with a myth or fact game. Last, we had an activity in
which the youth were asked to give advice to teens who had had sexual
intercourse and were going to date someone new.

IKR?

One of the joys of last weekend was witnessing my godson's First Communion at a local Catholic church. I hadn't been face-to-face with a crucifix since my dad's funeral almost exactly five years ago, I realized. And while I still respect Jesus and his messages mightily, and found the routine of the Mass comforting, I have no regrets about my chosen UU spirituality -- especially regarding its guidelines and supports for our children.

The ice cream story above took less than five minutes to make on the iPad once we'd taken the pictures, as the interface is extremely simple and straightforward. The options aren't extensive, and I wish some of them were more flexible (scaling thought bubble and font size, flipping speech balloons), but hey -- the app cost 99 cents.

Mali was impressed as well. Here's her first effort:

Recommended, as long as your expectations are realistic, and especially if you have kids who can create and who might enjoy creating their own one-page comic strips.

4.12.2012

Tell me the truth: What would your reaction be, if you encountered a kid like Leo endlessly pacing a playground structure as in the video below? If you didn't read this blog, or blogs like it; if you didn't have your own Leo, if you weren't a variation on Leo yourself? Would you back away awkwardly from the weird kid while scanning the perimeter for his adult? Would you tell your own children in an intentionally over-loud voice, "well, I don't know what he's doing so we'll wait until he's all done"?

Or would you relax into his joy, recognize it, accept that pacing a circuit is some kids' idea of The Very Best Fun?

I did not start out from a place of acceptance. As a disability
community outsider and a fairly non-intuitive person, I lacked the
context, experience, and insight to see past our society’s too-prevalent
autism stereotypes of pity and parental burdens. I never knew anyone
who identified as Autistic, never realized the full variation of the
autistic experience, never considered that autism did not have to
preclude Leo from living a full and happy life. Thankfully, the online
and offline worlds are alight with autism acceptance trail blazers —
autistics of course, professionals and parents too. They have not only
shown me the way, but shown me incredible patience along the way (I’m
not always the best listener). And I remain mindful that I still have
much to learn about autism, and that much of that learning will come
from Leo himself.

What we try to do in our book is help people learn to think critically and rationally about autism even when they are in the midst of this whirlwind of new information. So many parents are so distraught when they learn their child is diagnosed with autism. We want to help them through that. And we want to let them know that even though the media tends to perceive people with autism and special needs like this lightning bolt of ‘bad luck,’ people with special needs are part of our community. They’ve always been here. This is just another way of being. These people need more understanding. Yes! They need more support. Yes! But that doesn’t make them “other” or “less than.” These are families that need compassion and understanding, but not pity. We want to help people get past fear, myths and negative stereotypes.

The good folks at Babble Toddler Times wanted input about early intervention and autism (they also wanted advice for other paents to feature -- I suggested an autistic autism parent, but the logistics did not work out):

My advice is threefold: Find a pediatrician who takes your concerns seriously, find positive, evidence-based autism resources and role models (this is exactly why we created Thinking Person's Guide to Autism), and try to understand that your child's behavior is a form of communication. Our kids deserve to achieve their potential, but can easily get left behind if their unique needs are not properly identified and addressed early on. Autism experts can help us recognize where our kids need help — be it with communication, self-help, academics, or social skills — and the best strategies for supporting their needs.

Finally, we've had TPGA interviews for a ton of additional radio stations: KCBS-AM San Francisco, WSNJ-AM Philadelphia, WVNE-AM Boston, WYRQ-FM Minneapolis, WOND-AM Philadelphia, WQYK-FM Tampa, and four more coming. Mali and Leo heard the local interview with Jeff Bell; Mali was so impressed that she waited until the segment was over before demanding I put her Goblet of Fire audio book back on. Should you ever need to get the word out about a book, I hope you'll be fortunate enough to enlist the services of the phenomenal Media Masters Publicity -- we have them to thank for these radio spots!

4.03.2012

There's a reason for the lack of posts lately: Writing and presentations and interviews elsewhere. A lot of them. Most in March because the entire TPGA team has been busy promoting the Thinking Person's Guide to Autism book -- but then last week the CDC issued a new report on increased autism prevalence, and yesterday was World Autism Awareness Day and the beginning of Autism Acceptance Month -- and the pace stepped up.

Interviews and guest posts since Thursday (and one upcoming), Every single one with Leo front and center in my mind, and I hope readers'/listeners' too:

At Parents Magazine, the lovely Ellen Seidman of Love That Max wrote: "April is Autism Awareness Month, and I’m turning over the blog to amazing parent bloggers who have kids with autism." That will include other TPGA editors throughout April. Here's an excerpt from my guest post:

My autistic son Leo is curled up on the couch reading a new book: Planes, by Byron Barton. I’m sitting next to him, basking in the joy of a kid who adores those flying machines, glad the book is distracting him from some also-new canker sores. Leo’s kind of autism means he speaks mostly in requests, and can only tell me generalities about his pain: his mouth hurts, he wants me to make it stop. He is not able to tell me how intense the pain is or how long he’s had the sores, which makes my heart ache. It also means his treatment plan is going to require guesswork.

I’d need even more guesswork if Leo didn’t have a large, supportive online community of autistic adults and autism parents and professionals at his back: willing to share their experiences of being autistic and in similar pain, telling me what worked for them or their kids or their patients, offering approaches that help autistic people tolerate medical treatments. I am so grateful to the autistic adults who understand and relate to Leo, the autism parents who have been in my shoes, and especially to the parents who are themselves autistic and so have extra insight about how best to help my son. As long as we have wifi, our family will have 24/7 acceptance and support.

The good folks at Toca Boca asked if Leo could be their WAAD poster boy. Well, yeah! Leo's love of Toca Boca apps is well-documented. Excerpt:

Playing Toca Kitchen with Mali
during Iz's doctor appointment

My son Leo, like most kids, glows with an awesomeness that takes many forms: he’s a fierce bicycle rider, a fish-like swimmer, a walking happiness explosion, and an iPad fiend. He’s also autistic, which for him means speaking is difficult (though he hears just fine), learning is unpredictable, reading is hard, other people can be confusing, and even independent play can be overwhelming.

Having an iPad helps Leo through many challenges. It’s changed his life, and I don’t write that casually.

Siva of TechInSpecialEd, a site I like so much I recommended it in the NY Times, asked me and Jen Myers to host an Autism A-Z party for WAAD. The questions from the participants were really excellent, and it's always a treat to watch how quickly and intuitively Jen thinks on her feet. Here's a representative quote of mine, in response to a parent asking how we can help parents and relatives understand autistic kids:

This webinar will discuss iPads and apps as dynamic and cost-effective
learning and leisure tools for people with autism. Ms Des Roches Rosa
will also highlight some of her (and her son's) favorite apps, and their
specific benefits.

I got slightly grumpy about the way some orgs celebrate Autism Awareness Month:

Many autism organizations are celebrating April as Autism Awareness Month. But others, especially those in which autistic people have a say, are celebrating Autism Acceptance Month instead. Why?

Because Autism Awareness doesn't really help autistic people in general, and kids like my son Leo specifically. It makes it too easy for well-meaning people to feel they are "doing something" about autism if they wear a blue ribbon or buy a blue light bulb -- when neither of those actions translate to real-world benefits and support for autistics and autism families. Autism Awareness campaigns let people look at Leo Bike Riderpictures of kids like my sweet Leo (riding his bike in the photo), and say "awww" or "bless his heart" while still considering him as a statistic, a number in an "epidemic" (autism is not a disease), a burden to society.

Because we consider April Autism Acceptance Month, Thinking Person's Guide to Autism will feature "Slice of Life" conversations with Autistics of all ages -- kids through adults -- for each of the month's remaining 29 days. We will profile a different autistic person every day, answering the same set of questions -- in a similar spirit to (although for copyright purposes otherwise unlike) the Proust questionnaire capping each issue of Vanity Fair magazine.

Why? We'd like to help our non-autistic readers get to know autistics as people who have interesting, complicated lives, and who are as diverse and varied as any other random population united by a label. We are the people in each others' neighborhoods, and the more we know about each other, the more visible we and our children are, the more common Autism Acceptance will be. That is our hope.

Steve Silberman's NeuroTribes post goes even further, asking people from the autism communities -- including all five TPGA book editors -- what they think actually needs to be done (and damn, it got BoingBoinged. I so very, very support what Steve wrote:

Obviously, even a month of acceptance will not be enough to dramatically improve the lives of people on the spectrum. What could be done to make the world a more comfortable, respectful, and nurturing place for millions of autistic kids and adults – now, starting today?

Yesterday at ChildMind.org, Beth Arky interviewed several autism parents, many of whom are TPGA contributors, including me -- about how autistic children are not "going to magically stop needing support after they reach a certain chronological age."

Today's fifth World Autism Awareness Day kicks off a month perhaps best known for fund-raising walks and a flood of media coverage. But for parents whose children were among the first wave diagnosed with autism—as well as those with younger children who see the future fast approaching—the pressing issues have gone well beyond awareness.

These parents face the harsh reality that when their children—200,000 of them over the next five years, according to one estimate—reach 21 or 22, depending on the state, all the educational supports and services they have been receiving under the federal Individuals With Disabilities Education Act (IDEA) will vanish. This forced transition, called "aging out," pushes them into the woefully lacking system for disabled adults.

Katherine Stone wrote about the new autism prevalence numbers for Babble:

The CDC researchers believe the increase in autism in
children is due to better awareness and identification by parents,
communities and healthcare providers, and several experts have chimed in
to say that, as scary as the numbers sound, the increase could actually
be a good sign. It means that more kids who need them are being
connected to services and treatment.

[Rosa] said she wasn’t surprised at all, especially, “… given last year’s news about autism prevalence rates of 1 in 38 in South Korea.
If you look at the CDC’s report closely, you’ll see that rates vary
widely by region, and that part of the increase is due to missed
diagnoses among the Latino and African-American children. Underdiagnosis
and misdiagnosis among minority children is something folks like Holly Robinson Peete have been talking about since 2010.”

Once again, Seymour found out I was going to be on Forum because someone at work told him, not because I did.

The show, also on the new CDC rates and what they mean (more evidence that autism has been here all along and we're mostly just getting better at finding autistics) was primarily a three-way conversation between host Dave Iverson, me, and Dr. Sanford Newmark, head of the Pediatric Integrative Neurodevelopmental Program at UCSF. Dr. Newmark was a courteous and kind individual with whom I have much in common about autism and supporting autistic children -- but we differ markedly regarding helpful autism approaches.

It was an educational exercise in respectful disagreement and standing strong for autism science -- and I was very conscious of avoiding the Jenny McCarthy's "righteous parent" model of shouting down and ridiculing doctors with whom she does not agree. When I did not agree with Dr. Newmark, I tried to do so with respect, while citing the science, the scientists, and the studies.

You can listen below, would be interested in your opinion.

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Jen Myers and I also did interviews about TPGA for the Center for Autism's Skills Live yesterday, and I've done four radio interviews (KYW Philadelphia, WGTD & WJMR Milwaukee, and WBMX Boston) besides the KQED Forum one since Thursday, on TPGA, CDC rates, Autism Acceptance, you name it. Several more radio interviews coming up, will keep y'all posted.

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*pant pant* If I owe you email or money, this is why you haven't heard from me!